Ren's Ramblings & Writings

Sunday, January 11, 2015

my response to this beautiful ode to special needs parents at http://www.loriborgman.com/Archives/2002/05-May/Some%20Mothers%20Get%20Babies%20With%20Something%20More.html?&utm_source=facebook&utm_medium=social-media&utm_campaign=addtoanyI don't any longer
have that " strength of a draft horse while holding onto the delicacy of a
daffodil..." I've become wilted and fragile over years of fatigue (mental,
physical, and emotional) dealing with severe depression. Were it just my
special needs kids (two of them) that I had to deal with-piece of cake, really.
Even during my husband's many deployments... But life throws so much more at
you, never-ending. things you have zero power to influence. You can advocate
for and protect your kids, but you cannot save the world around you. You cannot
even influence whether the pharmacy gets your order right or drops the ball on
your refill, whether others around your child act reliably when your child has
a seizure and sustains secondary injuries. You cannot influence whether or not
the school handles your case wisely when another child bullies your child. You
cannot influence whether ER doctors have even basic understanding of your
child's condition(s). You cannot influence whether or not a teacher reliably
understands your child and interprets your child's behaviors accurately.

Worse than all this...
you have no power to influence, over and above your own children, whether or
not your sister makes good choices that protect and care for her own
children-your nieces/nephews or makes them homeless and endangered-you have no
power over whether society takes action on an abused or neglected child or
animal around you. You have no power to influence whether or not others around
you care for or cause the suffering of people and animals that you care about.
You have no power over whether or not your own personal ethics agree with the
ethics of your employer, the GOP, or your neighbor. You have no power over
whether or not people give animals away for free on Craigslist and allow those
pets to end up as bait for fighting rings. You have no power to influence
whether or not a company cares humanely for animals that are kept/bred for
human consumption. You have no power to influence whether or not someone
starves horses, dogs, or babies to the point of extreme suffering.

In the end, you have
only the ability to care for, protect, and advocate for your children in the
best way you know how. And sometimes we make mistakes. We get angry.. We get
tired. We are emotionally exhausted by more than just our childs' needs.

Never-the-less, we keep on
trucking. We react like clockwork, predictably, when our child has a seizure,
or stops breathing. We deal with the shock of traumas later, out sight of the
kids. Sometimes we end up needing help to keep on trucking (help of
other moms who understand, dads, doctors, pharmaceuticals, and others in
society)-but what is our choice-to lay down and die? We do not have that
luxury. We have children who need us for a very long time to come (or a not so
long time) and we are not likely to outlive them. So we have to do our best to
get thru each day and hope that we can set them up to be cared for or
self-sufficient in the future after we are gone... we have to keep our eye on
the ball, so to speak, which is enjoying the day to day, as well as just
getting thru the day to day of life, when knowing that the future for our
special needs kids can be uncertain...

And it is a struggle
to maintain some level of optimism some days... do we count on the GOP to care
for our special needs kids after we die? Our neighbors? Our alcoholic brother
or uninterested sister? Will a capable sibling care for the special needs
sibling as adults once we are deceased? The struggles to make our special needs
kids as capable as possible to care for themselves on some level in the future
takes place today.

Try being the mom with
all this on her personal "plate" whose autistic child acts out in
public-and everyone around judges you-and every action you take in this
situation is judged. every time you see the school's phone number in
your caller ID, your heart races, wondering if it's an emergency. Never mind the future, I'm trying to get thru the moment.... while
not losing sight of my child's future.... and some days it feels like a losing
battle... though in reality, it isn't-you're just extremely tired, mentally,
physically, emotionally...

None of this means you
don't love your children every moment; you love them with every breath you or
they take.

About Me

Veteran, mother, former Army wife and Navy daughter, Humanist Chaplain & Celebrant, secular ordained minister, MPA BA.
Renée serves as the chair for the Colorado Chapter of Americans United for Separation of Church and State (www.facebook.com/AmericansUnitedColorado), and enjoys reading, research, animal rescue, and all things generally saving the world.
Renee is the owner/president of A Life Well Lived Life Celebrations & Memorials, where she specializes in secular and combination format ceremonies for any and all who deserve to be honored!
www.alifewelllivedceremonies.com
Former volunteer activities include the City of Fountain Planning Commission, Family Readiness Groups, the El Paso County Placement Alternative Commission, the Fountain Valley Foundation Board of Directors, and newsletter producer for the District 8 Special Education Advisory Council and the Pikes Peak Youth Assessment Center.
In her spare time, she would like to save the world, or at least her little corner of it.

About Coyote

Wisdom and Folly, Coyote teaches us how to look at ourselves and laugh. Coyote will be right there ensuring you that wise as you may be, you can still make mistakes. But in mistakes is growth and understanding. Be prepared for Murphy's Law, but not in the context of fate; rather, Murphy's Law will manifest in response to your own faux pas.